Name: Claire Erin Pretorius

Sex: female

Date of birth: 03/08/2006

Now lives in: South Africa

Epilepsy info

Dravet’s Syndrome, 20 June 2007

type(s) of seizures:
Simple Partial, Myoclonic, Clonic

frequency of seizures:
Has had three serious ones over the three months.

Medications used

Epilum – 3ml morning & 3ml evening
Ativan & Rotravil – when seizures don’t’ stop on their own – administered by syringe in I.C.U.

Lethyl (Phenobarbitone), We stopped this after 2 months as it no longer controlled the seizures.

Alternative Treatments

Personal Notes

Claire was 4 ˝ months old when she had her first seizure. December 24th 2006 @ 02:00 am we were lying in bed still watching T.V (thankfully), when I turned over to check Claire her eyes were blinking continuously, her tongue was protruding in & out & her right arm was jerking. Never having seen this before we rushed her to the emergency unit in the hospital & they administered Ativan to stop the seizure (lasted 30 mins). Our Paediatrician did a lumber punch and informed us she had Meningitis. After a week’s hospitalisation were discharged. Two days later she had her second seizure was hospitalised again & we were informed it was probably an after effect from the Meningitis. 6th Jan 07 Claire was admitted again for another bad seizure, an EEG & MRI were performed both of which came back normal. She was then put on Lethyl to control the seizures but we still had no diagnosis. This medication took a couple of weeks to start working so on the 14th Jan she had another seizure affecting her face, right arm & leg.
Claire continued to have seizures, up to 8 a day, some would subside on their own and others would have to be stopped in hospital. Our doctor decided to take her off Lethyl & try Epilum instead. Initially she seemed fine, but I started noticing she was experiencing myoclonic jerks during the day. She has had three bad seizures over the last three months, two of which due to fever, the last one on 18th June 2007. We were finally able to see a reputable Paediatric Neurologist on the 19th and he has diagnosed Claire with Dravet Syndrome. Our Neurologist has told us that as she has been diagnosed so young we should expect beneficial treatment from Steripentol.

Claire is now 10 ˝ months old, and I can already see she is behind developmentally, she can only roll over and is not able to crawl or sit as yet. I have never heard of this syndrome before, and after reading the stories on the web page I find myself feeling very disheartened yet at the same time hopefull. I can’t imagine what lies ahead for us in the fight against this syndrome but I pray the Lord will guide & help us through.
I will update once we have some results with the new meds.

Contact, Charne

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